The Isolation Journals

Happy almost February.  There are good resources for patients and caregivers that I would like to pass along.   The first one is Suleika Jaouad's Isolation Journals.  When our body's ability to support us disappears, it feels very scary and lonely.  The Isolation Journals answers letters from patients writing with issues for which they are seeking help.  I find Jaouad's answers and the gentleness with which she communicates them to be very touching.  Suleika Jaouad is the author of Between Two Kingdoms, which I mentioned in a previous blog.  She wrote about her heartbreaking struggle with Leukemia as a 20 something.  It is beautifully written, although rather graphic in parts (she talks about her experience with a bone marrow transplant that is really scary - my experience was better than hers).  It is heartbreaking to read about a beautiful young person so full of enthusiasm and hope whose life was short-circuited by Leukemia.  

She has made chronicling her struggle with cancer her career and her warmth and intelligence are touching and beautiful.  I've attached a recent post below.   In her book, as well as in her articles, it is also clear that being a caregiver to someone with cancer is a big and onerous job.  She gives some hints and help to caregivers as well.  I thank the universe for my children, my family, cousins and friends who have made me feel loved and supported during this very difficult chapter.  I would not be here if it weren't for their love. 

The specific issue she brings up below is one that I have tried to approach, unsuccessfully, a few times in my blog.  It is that of the intense changes in one's physical appearance that cancer brings.  In a country that puts such a high value on physical appearance, the loss of hair, muscle mass, smooth skin, etc. is an added devastation to the problem of having cancer.  It is hard to explain this without sounding insufferably vain (until you experience it), which is why I have avoided this very painful subject.  

"I was never beautiful, but I fit into the world. Now I feel that the huge gap between my own mind and body is manifesting into a gap between me and the world."  

"When I’m ... wan from chemo and confinement in fluorescent-lit rooms, it has always felt jarring to go out and notice people staring. When that happens, I can’t help but feel like a freak. Added to that is the stranger reality, and the one that’s maybe more embarrassing to admit: that I can’t even handle my own gaze. "

I hope this is helpful in some way.  Peace and love and thanks to you.  

 https://open.substack.com/pub/theisolationjournals/p/beholding-the-body?r=1lb01p&utm_campaign=post&utm_medium=email


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